From Invisible Illness to Visible Illness

I have crossed a line in the world of chronic illness.  It is a line that I never wanted to cross.  Up until this week,  on a really exceptionally good day, I could go out in public and hope that no one could tell that I was sick.  If I wore the right shirt, no one could see my port.  I could resist using my scooter, with the assurance that I would sit down if I thought that I was going to faint.  I could put on some makeup, fix my hair, shave my legs, and put on a cute outfit. To the untrained eye, I looked okay.  Just a really thin person with a pale complexion.  No need for alarm or pity. People pass by, unfazed.  I blend comfortably into the background.  The perfect wallflower.  This is where I feel safe.  I’ve been working harder and harder at hiding, suspecting that others are picking up on my secret.  I see it in their eyes, the recognition of illness, but I quickly look down or look the other way.  I recoil at pity. It nauseates me.  (Well, lots of things nauseate me. Maybe that’s not fair to say!) Up until this week, I could go out to dinner with my family, and with great effort, seem like a pretty normal young mom of tots.  I could go to church gatherings and seem like the pretty average pastor’s wife.  I could have coffee with friends and feel like one of the girls.  I was in control of how much people knew about my illness.  I was in control of if  people knew about my illness.  I could call the shots, and I could maintain the illusion of normalcy until it felt appropriate to share what feels like sensitive, privy information about myself, a 34-year-old mom of a 3 and almost 2-year-old, wife of a pastor, writer, singer, teacher.  I could let people believe the lie that I was pretty normal before this week until I chose to open up further.

Now, I feel like my choice has been taken away.  The portable oxygen tank and tubing coming out of my nose, reminiscent of the The Fault In Our Stars or other tragic movies about illness and dying, now alert people with first glance to my crippling conditions. I can’t keep my secret and share at my own discretion.  I can’t go out and expect to be treated just like everyone else.  As I step out of the car, I can choose to look into the eyes of pity or stare at the ground in embarrassment.  That is my choice now.  So I’ve needed oxygen for a while.  Getting on oxygen doesn’t intrinsically change my state of health, except to regulate my O2 saturation levels.  It does, however, change my state of health in the eyes of others.  Now I am officially, 100 percent, unequivocally sick.  My presence carries with it a state of tension, of awareness of our morality, an unwelcome reminder to many people.  I am now more offensive than I was a week ago.  And maybe I can start to let go of my false pretense that has probably not been fooling anyone but myself.  Maybe this is the beginning of acceptance, and even hope.

I struggle to understand the concept of “invisible illness.”  I am not sure what illnesses fall under the umbrella generalization term of invisible illnesses.  Mental illnesses, chronic illnesses that people generally cannot see, anything that is not obvious to the unknowing bystander I suppose.  I read on boards and on blogs about the burdens of carrying around “invisible illnesses,”  and I think that I understand to some extent.  Sometimes, we really just want others to know how much we are suffering.  We want to scream from the rooftops how much pain we are in, how “exhausted” doesn’t even scratch the surface of our deep bone-weariness, how much we are in emotional and physical agony.  We can’t just “suck it up” and get better.  For me, however, I think the majority of the time, having an “invisible illness” felt like a preferable option to having a “visible illness.”  I certainly don’t want to step into a room and be seen.  I like to settle in under the radar.  I don’t want to be a label or a stereotype.  I want to have the ability to present myself as I please at any given time.  I want the chance to write and share my own story, not to have “a story” written across my body.  I do think that I understand wanting compassion and understanding in the midst of indiscernible suffering, but I also want the ability and privilege to limit what people know about my illness.

I want to be able to share pictures on Facebook and not have people think, “oh, poor girl.” I want them to be able to see my joy and my hope and my peace.  I want them to see my healing, emotional and spiritual. I want my strength to be more apparent than my dependence on hospitals and oxygen tanks and other medical equipment to keep me going.  I want to run 5K’s and 10K’s and half marathons and marathons and have my children cheer me on.  I don’t want to have to explain to my three-year-old what these canisters that mommy has to carry around with her are (by the way, they are mommy’s friends, Jim-Bob and Frank. They are now my daughter’s friends too. And sometimes her babies need oxygen.).

So here is the core of my problem: (Spoiler alert:  It is not that my invisible illness is now a visible one.) The core of my problem is that I am too proud.  I am too self-sufficient, and I am too bent on being “strong.”  I don’t really want to be known.  I don’t want to be a burden, or in the spot-light, or heaven-forbid, to be pitied in any way, shape, or form.  I am a control freak (That was one of the doctor’s diagnoses for me at Mayo. No joke.).  You would think that by now,  I would be more adept at releasing control.  No control driving. Check.  No control with my schedule. Check.  No control of my body.  Check. No control of the amount of chemicals coursing through my blood. Check. No control of my finances.  Check.  No. I’m still a control freak, and by golly, I want to control what people think about me.  I am unwilling to be seen as sick.  But here, I am. Sick.  Clearly sick.  And I’m not in control of that.  Now, my therapists would offer me options of things that I can feel in control of so that I don’t feel totally helpless. That strategy could be helpful to some extent, but I think that really, I just need to let go.  Like completely let go.  It’s not mine.  None of this is mine.  People’s opinions of me, their appraisals of me, and their pity of me is not mine to own.

What is mine?  Jesus is mine.  He’s in control. And He is good. And He loves me.  And that is my foundation.  Visible or invisible illness, I have what matters.  I have an unshakable foundation, so I can lay down my illusion (I promise, that’s all it ever was) of control.  I can wear the oxygen, ride the scooter, pray for healing, and accept the answers, knowing that healing looks like many different things for different people.  And who the heck cares what people think???

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The Limbo of Illness

I have stumped every medical professional that I have seen over the past 9 months.  They have been so kind, so validating, so cautious, so attentive, and so void of answers.

“You sure don’t fit neatly into a diagnostic box.” 

“I’m afraid to touch you with a ten foot pole, you’re so fragile.”

“With you, I have to approach your medical care like I would an elderly patient.”

“You will never be able to be up and active for longer than 15 minutes.”

“I don’t want to wave the white flag in surrender, but I have no idea what to do.”

“It’s cases like yours where the medical field has to admit its limitations and insufficiency.”

Helpless. They all seem stumped. No one in their right mind can look at me, my symptoms, and my stats, and think that it’s all in my head; not even me!  But we hang in a balance, putting out fires, or rather, keeping the flames from spreading.  I try to live delicately, intentionally, caring as best as I can for this unstable and unpredictable temple. The light breaks through, sometimes in subtle ways, sometimes with great rapture. 

I gave up driving. That’s an illusion. It wasn’t an option.  My license would have been revoked had I not willingly released the wheel. Everyone in this town is much safer that way. It is just so painful, at 33, to relinquish bit after bit of control. Wasn’t letting go of control of the eating disorder enough?  My heart whispers that this surrender is soul-training. I’ve never really been in control. Better to be humbled now in order to learn what really matters. 

I shift among three different settings. The first is rebellion: there is nothing wrong with me. I will just force myself to be normal. I can do it. I am a machine. I will overpower my body. This never ends well. Like, really, not one single time. 

The second setting is resignation: I give up. I am disabled and will always be. I will collapse into my heap of pain, disorientation, and self-pity and cry into oblivion. 

The third setting is the one that I am aiming for: acceptance with hope. I am disabled today, and I must live within those restrictions. I have great opportunities for joy, love, and service in this limited, thorny body. It may not look like what I expected, and I can grieve that loss. I do not, however, have the ability to foretell the future, and there is hope for healing. God can heal through the miraculous, new medical discoveries, or in more mysterious ways that are far beyond human understanding. However He chooses to heal or not, I know that the night always closes into the opening of the dawn. Hope is a constant. 

The ground feels shaky, like the tremors that accompany my wacky norepinephrine spikes. It feels shaky, but there is solid rock underneath my feet.  I will not be snuffed out by the darkness, because the Spirit of life is alive and well in my feeble, confounding, unstable body of flesh. As long as there is breath in my struggling lungs, there is a redemptive and beautiful purpose for my life. And I suspect that when the breath is no more, the breath of the Spirit will awaken my soul to the unbridled beauty that was but an inkling in even the most alert human mind.

It is sometimes in the limbo of illness that we come against a thin place: one where the natural and supernatural seem to hold hands. As I walk this road, I realize the truth of the beatitudes, and in this thin place, I see Jesus more clearly. I am in limbo, and I am abundantly blessed.